Women's Hospital offers care when cure can't be found

Ashley Cook was ecstatic when she learned she was pregnant with her second child. But a routine ultrasound revealed the fetus had alobar holoprosencephaly and was missing a portion of his brain. Doctors said the birth defect was fatal.

"We were just devastated. We didn't really know what to expect," said Cook, 26, of Murray, Ky. "That was probably the hardest part. There was a small chance the baby would not even make it to full term."

Cook and her husband struggled to deal with the news, but found medical, emotional and spiritual support through the new Hand in Hand Perinatal Palliative Care program at The Women's Hospital.

"There is a lot of palliative care in hospice programs," said Grief Support Coordinator Darlene Fischer, "but for them to be available to families having babies that have been diagnosed with something that might be a life-threatening condition is fairly new in the United States."

The idea for a perinatal palliative care program at The Women's Hospital was first discussed several years ago. The need for the program became more apparent when Tri-State Perinatology opened offices at the Warrick County hospital. In 2009, staff went for training and began reviewing programs in Indianapolis, St. Louis, Cincinnati, Nashville and at Duke University in North Carolina. The program was implemented in December, and the Cooks were the first family to receive services.

"From the time I first met them they were basically shut down — that's the shock element," said Chaplain Janice Coffing. "Chaplain Janice," as she is known, began meeting with the Cooks after the baby's condition was diagnosed.

"We, as a team, are able to take away some of that shock factor ... so they begin to see that we hold their pregnancy — their child and his existence — in very high esteem."

The team also included Fischer, Dr. Brennan Fitzpatrick, maternal fetal medicine specialist of Tri-State Perinatology, and Christine Hake, genetic counselor.

Fitzpatrick said delivering information to patients about a child's fatal condition "is often difficult for them to hear and process."

He described the perinatal palliative hospice team as "critically important" in helping to deliver the message "in a way that allows patients to cope with their ongoing sense of loss" while reassuring them their loss is significant.

Cook continued to receive regular checkups to check on her baby's growth and learned the baby boy had a normal heart rate, which provided some comfort.

"Finally I realized we had to accept it," she said. "I worried about my other little boy and how traumatic it would be for him."

Cook expressed her concerns to the Hand in Hand support team, which reached out to her entire family, including 6-year-old Skyler.

"Christine would give me a call to see how things were going and make sure I was doing OK," Cook said. "There wasn't anything we could do at that point to make things better or worse."

Hake said the goal is to help parents understand what to expect. She said that gives parents "more time to parent in a sense during the pregnancy itself because they are not going to have the time to do that after the baby is here, unfortunately."

Chance Riley Cook was born Dec. 4. His father and Skyler were in the delivery room.

"(Skyler) told me his baby brother was going to be born today and that he had been waiting a long time, and he wasn't going to live very long" said Coffing. "But at least he could finally see him."

The Cooks took Chance home, where he lived for 24 days. Cook said knowing the hospice team was only a phone call away helped her deal with his death.

"That was really a relief for me especially when we could tell (Chance) was not doing well," she said.